Metastatic Breast Cancer: Helping Us Help You


For two days at the end of next week, I will be attending a brain-storming conference to discuss ways to help mitigate the collateral damage experienced by people with metastatic breast cancer. This discussion will include patient advocates who have MBC, and patient advocates who have had non-metastatic breast cancer and are clinicians who treat cancer patients in our practices. As many of you already know, I belong to the latter category.

Some months ago, the Dr. Susan Love Research Foundation launched the Metastatic Breast Cancer Collateral Damage Project [MBCCD Project]. Initially, the project began by developing a survey to gather information about collateral damage from those who live with it. Then, clinicians like myself, who have had breast cancer and who treat patients with breast cancer, were asked to step forward and volunteer to help. Recently, the survey study was conducted, inviting people with MBC to describe the impact of MBC on their lives and provide details of all the types of collateral damage it has caused. A Health of Women (HOW) Study™ questionnaire was used to document this damage. Once the survey results were collected, DSLRF arranged for the conference I described above, and I was invited to participate.

Based on the survey results, an agenda has been drawn up to help guide those of us who will attend the conference. We will be meeting to review everything that has been shared by survey participants, and to work on developing concrete recommendations to improve the quality of life for people living with MBC. The goal is to come up with specific recommendations, based on our personal and clinical experience, and to share them widely.

I work as a physical therapist. Oncology rehab was one of my clinical internships in grad school. I have worked in many settings over the past twenty-five years, but for over a decade now, I have worked for a visiting nurse agency affiliated with a local hospital and healthcare system, providing physical therapy treatment in patients’ homes. I help all kinds of patients with all kinds of problems that often extend beyond the scope of physical therapy. That’s how it is in homecare. Both nurses and physical therapists serve as case managers for patients, which means that we need to ensure that our patients get help with all of their needs — medical, pharmacological, emotional, and financial. We do this by knowing when to bring in other clinicians who have specific expertise and by advocating for our patients with their physicians. We also have a palliative care team to help cancer patients and others with serious illnesses to manage pain and collateral damage of all kinds. I’m very lucky that I get to help advocate for and assist patients in such concrete ways. Believe me, when you treat someone in her home, you really see the impact that cancer has on a person’s energy, daily life, family, and finances in a way you cannot in any other setting. Having been a breast cancer patient myself really helps, too. Consequently, I feel that I have a lot to contribute to this next phase of the MBCCD Project. And, incidentally, I am looking forward to meeting folks in person whom I’ve only known in cyberspace, like Lori, who blogs at Regrounding. A wonderful perk!

I can tell you truly that the most important thing I do to be a good clinician, and a good friend, for that matter, is to listen. So, thank you to all those who completed the MBCCD survey. Thank you to my friends with MBC who have shared so many of their personal struggles with me and trusted me for advice, support and friendship. Thank you to my amazing patients who have taught me much more than I’ve taught them. And thank you to my blog readers. I want to invite anyone who reads this now to help me, to help us help you, by commenting here on the blog or on social media, by emailing me at kk@accidentalamazon.com, or by messaging me on Facebook or Twitter. The more we know and understand, the more and better help we can provide. I’m listening.

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The Misogyny and Deplorables* of Pinktober

The wrong kind of awareness.

It’s probably happened to all women. It recently happened to me when I made a homecare visit to a patient’s house, and she introduced me to her son. But the setting could be at the office or at a party. You are introduced to a man for the first time. The man doesn’t meet your eyes, doesn’t reach out to shake your hand, doesn’t say hello. Instead, he first rakes your body with his eyes to check out your legs, your breasts, your physique. It might be unconscious on his part, but he does it anyway. It might be entirely conscious, and when he finally does meet your eyes, they may show an approving leer or a dismissive sneer. You stand there and realize several things at once. You are aware of feeling uncomfortable. You know you’ve been judged, sized up, checked out, based entirely on how you look. Your personhood has been violated and dismissed. You doubt that this man will take anything you say seriously. Whatever redeeming qualities he may possess, you know that, in a fundamental way, he’s acting the part programmed by our culture, which is to act like a sexist jerk, just like the hundreds of other sexist jerks you’ve already met in your life over the years. What is unlikely is that you will say something. You’re used to it, too used to it. You’re busy, you have other things to think about, you have work to do. You try to ignore it and move on. But you store the encounter in that repository of shame, anger, fear, and frustration that every woman lives with from the day she is old enough to be aware of the threat that such encounters represent.

And these encounters are just the tip of the iceberg. In the past several weeks, we’ve all been made painfully aware that the mindset of rape culture reaches all the way from our courts to our presidential election. But its reality is hardly new. Back in November of last year, writer Gretchen Kelly wrote about it in the Huffington Post. She described the ugly truth, that “this is what it means to be a woman. We are sexualized before we even understand what that means. We develop into women while our minds are still innocent. We get stares and comments before we can even drive. From adult men.[…] We learn at an early age, that to confront every situation that makes us squirm is to possibly put ourselves in danger.”

Recently, a 2005 recording was released in which the GOP presidential candidate demonstrated the depths of his sexist depravity by asserting his belief that he was entitled to engage in sexual assault. Following this, Kelly Oxford invited women to tweet their first experience of sexual assault. A day later, she reported that she’d had over 9.7 million Twitter responses from women, many of whom saying they had more than one story to tell.

What does this have to do with breast cancer awareness?

For eight years, I’ve been speaking out in this blog not only about the corporate merchandising that exploits breast cancer, but also about the sexualizing, objectifying slogans, games, products, and so-called awareness campaigns that reduce a deadly, incurable disease to a prurient party about breasts. And for eight years, many of us can attest only too well that, despite our best efforts, these tone-deaf endeavors continue, and that many men and women, including some who have experienced breast cancer, fail to understand why we object to this ceaseless crap. “Lighten up,” we are told.

And why do we object to it? Why can’t we just “lighten up” and brush it off? Because, people, it’s part of the same culture in which men think they have a right to leer at our body parts and disregard our very existence. It’s part of the culture that produced a presidential candidate who bragged that his star status permits him to walk up to strange women and “Grab them by the pussy.” It’s part of the culture that obscures genuine awareness of breast cancer with exhortations to save the ta-tas, the hooters, the boobies, everything but saving the women and men who will die of this disease when it metastasizes.

It’s part of the culture in which the corporate donors of possibly the best-known breast cancer fundraising organization in this country evidently think there’s nothing wrong with raising money for breast cancer ‘awareness’ by selling sex toys, or by inviting women to show up at nightclubs in pink bikinis. It’s the culture in which that same organization has been loathe to revise the happy, pink image of survival it orchestrates at its fundraising events by including those who will ultimately not survive. And when that organization does finally invite someone with metastatic breast cancer to speak at one of these events, she is advised beforehand that “parts of my speech might ‘terrify’ the newly diagnosed in attendance and those sections should be deleted.”

But we should be terrified. Indeed, we are terrified. When 113 women and men die every day in this country of metastatic breast cancer, when the number of these deaths each year has not appreciably changed in decades, we ought as a society to be not only terrified, but ashamed.

We ought to be ashamed of a culture in which a judge gives a rapist a six-month sentence, stating he was concerned about the impact that prison would have on a man who assaulted an unconscious woman, but not evidently concerned about the impact that being raped would have on his victim. In light of that, perhaps we ought not to be surprised that this same culture can claim that breast cancer is the “sexy” cancer; that people can regard mastectomy and reconstructive surgery as merely “a free boob job;” that a pitiful, single-digit percentage of breast cancer research funding is spent on metastatic breast cancer, when up to 30% of those who are diagnosed with early breast cancer will develop metastases.

But we really must, by now, realize that this is unacceptable. It is abhorrent to define the disease that kills over 40,000 people each year entirely by the breasts in which it may first appear. We must acknowledge that trivializing breast cancer with campaigns and slogans that objectify women is an insidiously cruel, demeaning, perverse form of misogyny. And that we are obliged to reject it, as loudly as we can, as long as it takes to change it.

*Go the this link for the origin of the phrase, “basket of deplorables.”

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The Pinktober Curse: Wake Me Up When It’s Over

On October 1st, the small town I live in is having an outdoor celebration called RiverFest. I live in the Ocean State, but it could also be called the River State. Or even the Pond State. In any case, we have a river called the Saugatucket, with a great walking bridge over it in the town center. RiverFest is basically a block party, with food, music and general mingling. One of its special features will be a thing called River Fire, in which several cauldrons of fuel will be floated along the Saugatucket River and lit after dark, while music plays in the background. I couldn’t find a good photo, but it’s a spin-off of Water Fire, an event started years ago on the Providence River by a former mayor. Here’s a photo of a previous Water Fire, Providence, from MI Business Mag.

We don’t have gondolas at ours, but it’s really magical and even spiritual in an elemental way that’s hard to describe. I plan to be there. And pretend Pinktober isn’t happening.

After that, I wouldn’t mind being plugged into an IV of Versed for the rest of the month and beyond, as long as I were woken up in time to vote in the Presidential Election. Then, I’d want to be sedated again for twenty-four hours, gently awakened when the results were in, and, depending on which way it goes, either provided with a bottle of champagne or another dose of Versed.

I’ve been objecting vehemently to Pinktober for years now. And I’m tired. I’m tired of the trivializing games, the sexualizing slogans that focus on saving body parts instead of lives, the lack of focus on research and on the unacceptable death toll which remains largely unchanged. It’s all so SSDD (same shit, different day). A case in point is that Komen has launched another tone-deaf campaign this year. It’s called More Than Pink, and it physically sickens me to provide the link. Should be called “Just More Bullshit.” The headline declares that Komen has defined a new goal to “cut current breast cancer deaths in half.” I guess cutting the other half of current breast cancer deaths doesn’t count. I’ve read the press report about three times now, and I still can’t figure out what exactly Komen plans to do to accomplish this remarkably callous goal.

I first learned of Komen’s campaign yesterday, in a Facebook post by my friend Lara, who blogs at Get Up Swinging. Of note is that Komen has actually trademarked the phrase “More Than Pink,” which was, in fact, first coined by a cancer activist group called Real Cancer Awareness in 2013, whose mission is to counteract the pink bullshit by promoting some genuine awareness of cancer — all cancer. To that end, they put together some amazing videos, which you can watch here and here. So, not only is Komen klueless once again, but they’ve also ripped off someone else’s catch phrase once again. And they actually pay a bunch of marketing people an obscene amount of money to do this. They must hire them from another planet. Or maybe they’re zombies. Today, another friend, Kelli Parker, summed up Komen’s idiocy nicely with a Facebook post headed, “In related news, American Red Cross announces bold new goal to START helping disaster victims.”

Fortunately, there are a lot of folks in our social media community who are not zombies. One effort to start Pinktober on some kind of useful footing will occur on October 1st. It’s called #BreastCancerRealityCheck, and it invites all of us to flood social media with examples of what real awareness comprises, in order to leaven the stupid pink party and merchandising extravaganza that Pinktober has become. Please click on the link and add your support.

In the meantime, I’ve run out of energy for more words, but I’ve been spending some quality time with Photoshop. Here is one of the results. Feel free to share it by using this link. Or click on the meme itself. Hope it makes you laugh. We could all use a laugh, even if it’s a sardonic one.
Pinktober-Curse

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Calling the Shots — A Book Review

Recently, I had a new homecare patient who had visited the ER with acute symptoms of a pinched nerve in her spine. She had pain, muscle spasms, and burning numbness all the way down one leg. She’d had an X-ray which was pronounced negative for a fracture, but the causes of pinched nerves usually cannot be confirmed without an MRI. She was offered no advice about pain management. Instead, she got sent home with the suggestion that she see her regular doctor.

She did see her primary care doctor, who referred her to a spine specialist. The specialist did order an MRI. The MRI showed not one, but several contributing factors that explained her symptoms. The specialist then referred her to a neurologist to rule out a few other things, but did not offer any treatment. She saw the neurologist, who ordered lab tests. While she was waiting to get those tests, her primary care doctor referred her to our agency for home nursing and physical therapy. By then, six weeks had gone by. In all that time, none of these doctors had prescribed anything for her pain, except to suggest she take tylenol, an analgesic that may reduce fever and muscles aches, but does not reduce inflammation or nerve pain.

When a pinched nerve occurs, it means the nerve root that is exiting the spinal cord is inflamed from being compressed, and is causing all kinds of nasty sensations down one limb, which can lead to permanent muscle weakness and peripheral nerve damage if not addressed. It is standard practice to treat a pinched nerve by prescribing a strong anti-inflammatory, sometimes even a short course of a steroidal anti-inflammatory, and often to prescribe something like neurontin to mitigate the altered nerve sensation. This is not rocket science. By the time I saw this patient, fully six weeks after her symptoms started, none of that had been done. She’d tried tylenol, but it hadn’t really helped. Big surprise.

“Why didn’t anyone give you something else for your pain?” I asked her.

“I don’t know,” she said.

“Did you ask them for something?”

“Well, no. I thought they would realize how painful this is, and that tylenol was the best thing they could suggest.”

Meanwhile, I proceeded to educate her, advocate for her, and do what I could to relieve her symptoms. She likely needs surgery or at least anti-inflammatory injections in her back. She is feeling better, but is still trying to find a doctor who will offer an acceptable solution.

This kind of scenario gets repeated far too often in our healthcare system, and illustrates two of the primary issues addressed by author and blogger Beth Gainer in her book, Calling the Shots. The first issue is how doctors may not offer adequate and timely help in the first place, including how to manage basic symptoms like pain. The second is how patients assume that doctors know how they’re feeling and don’t insist on more effective help. Neither one is a good healthcare strategy.

In a perfect world, we wouldn’t need a book like Calling the Shots. Nor would the author herself have had to experience the sometimes appalling but not uncommon slings and arrows of the healthcare system that led her to writing it. But if you’ve ever been a patient, especially one with a serious illness or injury, or have ever advocated for a loved one who’s a patient, the odds are high that you know all too well that the healthcare system is far from perfect.

I know firsthand how imperfect it is. As a patient, I’ve endured many experiences similar to the ones that Beth describes. As a clinician working in homecare, I spend virtually every work day trying to prevent such experiences from happening to my patients. You might think that clinical experience would have made it easier for me to navigate the system and to prevent such experiences from occurring to me when I was diagnosed with breast cancer. And you’d be wrong. Indeed, it was largely because of those experiences that I started this blog.

Don’t be surprised if, like me, you manage to read Calling the Shots in an afternoon. But don’t let that fool you. The book may be concise and easy to read, but it packs a powerful message. And that message is that you are and must be in charge of your medical care, and that the outcome of the treatment you receive may depend entirely on how well you take charge of it.

In straightforward prose, with examples drawn from her experience, Beth outlines practical steps you can take to make sure you are getting what you need, even if you’re not sure what that is. It can be challenging to advocate for yourself when you are at your most vulnerable, but even then, Beth’s concrete advice can help you wade through your own uncertainty. When you are not up to advocating for yourself, she describes how to identify others who can help advocate for you, and how to restore the feeling that you are in control.

The more serious your health issues may be, the more complex and difficult your treatment may be, the easier it is to feel like hanging onto the reins is like trying to herd cats. All too often, we can feel that, rather then heading up our own healthcare team, we are at the mercy of schedulers, gate-keepers, slow diagnostics, and miserable side effects. Beth draws from her own experience of all of these issues and more to outline steps we can take to identify how we feel and what we need. Those steps can be accomplished with tactful, but assertive, direct communication. If we still are not getting what we need and want, we can and should fire those clinicians who bully or obstruct us, and find others who won’t.

And we have every right to do so. If there is one overriding message to Calling the Shots, it is to remind us that we have rights as patients, that we should be the reason for the healthcare system, and not its victims. Read this book and empower yourself.


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